HIV Vaccine Trials and the Science of Oppression

By Joe Osmundson

November 18, 2010

For our World AIDS Day 2010 section, we wanted to capture the diversity of the AIDS community. So, we reached out to people across the world -- mostly those who have never written for us before -- and asked them to guest blog. These columns are written by people who are living with HIV, have been affected by HIV, or work in the field.

Joe Osmundson

I am a scientist and a queer man. These two worlds, for the most part, exist in separate spaces. However, on rare occasions the two spaces crash together uncomfortably.

One Saturday night in winter I found myself in Chi Chiz, a West Village staple that is now being threatened with closure as the neighborhood continues to gentrify. Chi Chiz is one of the oldest bars in New York that is traditionally patronized by gay men and women of color. This particular night I was surprised to find that I was not, in fact, one of the few white men in the bar. Upon settling in, and ordering a drink, I realized that most of the other white folks had clipboards and fliers. Interesting. They worked this small room, talking to strangers, but not in the "I want to get your phone number..." sort of way. Curious, I started to eavesdrop.

It turns out that this small group of mostly white men had come into Chi Chiz to recruit for an HIV/AIDS vaccine study being conducted in the city. My mouth, almost immediately, dropped to the floor. And when I picked up my senses and managed to listen to the content of their pitch, my anger and frustration grew.

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I should admit that I am not only a scientist, but my research has largely focused on microbes and how they manage to make us sick. As an undergrad, I worked on retroviruses, like HIV. I was and remain fascinated by how one virus that is made up of only 13 genes (!!!) can manage to wreak such havoc on a complex organism, like a human, by eradicating its entire immune system. Above and beyond this initial curiosity of studying viruses, I am also fascinated by the work done by scientists and how it directly affects and impacts communities. At Rockefeller University, the school I attend, I have the amazing opportunity to be taught by some of the same scientists who helped pioneer the use of the drug cocktails that have changed the lives of many living with HIV.

But back to Chi Chiz.

Enrolling in a drug or vaccine trial is an incredibly heroic act where individuals may well be putting the best interests and health of their community before their own. In fact, HIV vaccine trials have been fraught, with at least one very recent example of an HIV vaccine appearing to increase the likelihood of infection. Individuals should enroll in such trials only after careful thought and consideration of the real and tangible risks, as well as the benefits that a vaccine may provide in the future. This can never happen over cocktails.

Yet, this measured analysis was absolutely absent from the recruiter's stump speeches. They talked about the desperate need for a vaccine, how condom use is simply not good enough to prevent the spread of HIV because condoms break. They implied that vaccine research was nearing a conclusion, that in fact a vaccine may be imminent. It sounded great, the only problem is that none of it was even remotely accurate.

We should not ignore the transformative difference an HIV vaccine could provide in global public health, nor should we stop trying to develop a vaccine because trials in the past have proved ineffective. What is absolutely critical, however, is that scientists have the highest ethical standards when it comes to recruiting volunteers to undergo what can be dangerous clinical trials. And when it comes to communities of color, that hasn't always been the case -- the scientific community has a less than stellar track record.

The infamous Tuskegee experiments where scientists purposefully withheld treatment from 400 black men with syphilis; forced sterilizations of black women in the '50 and '60s; and the questionable testing of the birth control pill on women in Puerto Rico are just a few examples of many gross acts of inhumanity endured in the name of science. And while these injustices may have happened generations ago, we are not far removed from it at all. This cultural mistrust for the medical community still brews inside many people.

If there is any hope of gaining trust in the communities most affected by HIV, scientists must act responsibly. Recruiting participants for potentially dangerous clinical trials at bars, particularly bars catering to communities of color, by lying about the risks and benefits involved is no way to gain this trust. In fact, it will only further enshrine the scientific enterprise in accusations of racism, classism and homophobia.

Joe Osmundson is a biophysicist who attends Rockefeller University in New York City.

Comment by: Richard Jefferys
(New York)
Tue., Nov. 23, 2010 at 8:00 pm EST
The HIV vaccine study in Thailand was published in NEJM in 2009 and showed a statistically significant *reduction* in risk of HIV infection among vaccine recipients (a little over 30%, but with a very wide confidence interval). The trial where there was evidence of enhancement was called STEP and most of the sites were in the US and South America, it involved an adenovirus-based vaccine made by Merck that is no longer being developed. The enhancement was seen in a subset of men with specific characteristics (antibodies to adenovirus and uncircumcised) and men with these characteristics are being excluded from the trial to which you are referring in this post.

For the record, I am not against vaccine trials. Indeed, as you point out, some MODEST protection has been shown, although, also as you point out, the statistical significance of the protection is not as clear as we would like.

I am simply arguing for responsible participant recruitment in vaccine trials. To my understanding, we are not on the verge of testing a vaccine that would protect against HIV like vaccines we have against other viral pathogens (polio comes to mind).

The recruiters I encountered implied that such a breakthrough was indeed near. They also suggested that an HIV vaccine was necessary because condoms are not sufficiently protective against HIV transmission.

While condom use doesn't FULLY protect against HIV transmission, it is extremely effective, especially when condoms are used correctly and consistently. This misinformation about the effectiveness of condoms could be extremely damaging to the at risk LGBT community, as it de-emphasizes the important roll one can take in protecting one's own health by practicing consistently safe sex.

Again, a bar may not be the most appropriate place to have the serious conversations required to appropriately consider participation in a vaccine trial.

In my 'gene' count, I was taking into consideration the fact that the protein products of gag pol and env are proteolyzed into individual proteins that have individual functions (ie pol encodes the reverse transcriptase, integrase, and protease proteins). Your count of nine genes is simpler and less ambiguous, and thanks for the correction.

Comment by: David
(New York City)
Tue., Nov. 23, 2010 at 1:15 pm EST
You sound like a pharmaceutical that doesn't want a vaccine because it would reduce their customer base. You even have ads Prezista (an HIV drug) on you blog for god's sake.

Comment by: Beryl Koblin, PhD and Magda Sobieszczyk, MD, MPH
(New York City)
Mon., Nov. 22, 2010 at 3:21 pm EST
We are the New York City HIV Vaccine Trials Unit, part of an international network in the pursuit of an effective HIV vaccine. We are most interested in Mr. Osmundson’s experience at Chi Chiz. We, too, believe that a safe vaccine that prevents HIV infection would have a tremendous effect on the health of the people here and abroad. As we all know, the effect of HIV has been particularly profound among communities of color. It is the devastating effect of HIV among many populations in NYC which drives our desire to contribute to the search for a vaccine which can be used by all people. Volunteers in HIV vaccine trials in NYC are incredibly diverse – White, Black, Latino, men, women, transgender and more. We make an effort to be present in a variety of communities to increase participation from these communities. We have a powerful presentation about the history of medical research in the Black community well-received by groups in the city and around the country.
So, getting back to the recruitment in NYC. It is our desire that multiple communities become aware about vaccine trials. Our recruiters are trained to raise awareness about vaccine trials and to collect contact information from people who would like to learn more. The first visit at our research sites is about education. During this educational visit, people really get to understand vaccine research, including the risks and benefits, before making a decision to participate or not. There are usually 2-3 more visits with our counselors and clinicians before someone enrolls. This provides many opportunities for questions to be asked, answered and for the participant to decide about whether or not to enroll.
We welcome Mr. Osmundson to come to one of sites to meet our recruiters, community education staff and counselors and clinicians. Please feel free to call: 212-388-0008 (Project Achieve-Union Square) or 212-305-2201 (Columbia Medical Center) or check us out at www.nycvaccine.org

I could not agree with you more about the great need for a vaccine that would prevent the spread of HIV. I also agree that it is critical to reach out to diverse communities both for educational purposes and to potentially recruit for vaccine trials.

However, I still question the wisdom of approaching potential recruits in bars. Additionally, I was disturbed by some of the information that these particular recruiters were disseminating as it was patently false. Even if further appointments provide an opportunity for education before enrollment in the trial, being transparent about the risks and benefits is absolutely critical from the first contact with potential recruits.

I hope this can be an ongoing discussion to ensure that recruiters are, themselves, well informed about the current state of vaccine research and the prospects that ongoing clinic trials will indeed produce a viable vaccine.

Comment by: Joe Osmundson
(New York NY)
Fri., Nov. 19, 2010 at 4:47 pm EST
Thanks for the comments. I did challenge one of the recruiters; they were simply not informed about the reality of vaccine research (they had never, for example, heard of the study in Thailand where the vaccine appeared to increase susceptibility). The worst part, to me, was the information that condoms do NOT protect against the spread of HIV; truth is that these same recruiters were likely canvasing other bars and continued spreading their misinformation.

And, at the minute, there is little hope of a vaccine in the near future. We're talking about anything being at LEAST 10 years away. Truth is that a vaccine may NEVER be possible to prevent HIV because of the nature of the mutability inherent in RNA viruses. That being said, there is some interesting, very basic, research going on pertaining to activating dendritic cells (very potent immune cells) that could be a game changer. But again, this is well more than a decade away.

Comment by: Erin
(Philadelphia, PA)
Mon., Nov. 22, 2010 at 1:36 pm ESTA great reminder to those of us working in HIV- and other health-related fields to remember who we should be accountable to. Thanks for your response, and again for posting the original article. I wish topics like this got more media attention.

Comment by: Erin
(Philadelphia, Pennsylvania)
Fri., Nov. 19, 2010 at 3:25 pm EST
Thanks for the post -- was wondering if you were able to negate the misinformation being spread by the vaccine study recruiters that night? Or challenge to recruiters to disseminate more accurate vaccine trial info in a less exploitive way?

Comment by: alex j.
(atlanta)
Thu., Nov. 18, 2010 at 6:25 pm EST
So when do you think an available vaccine could be done,,,10y 15y or 20y..I know it is impossible to predict something like that, but with your experience in the field....How long?

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